I'm brand new to this space, and I can't believe there are others out there like me. I've been so alone in all this. I was just diagnosed with hemiplegic migraines a few weeks ago after going through nearly a year of hell (there is simply no other word for it). I've never had migraines before, and I am in my 40s. I did get bad, bad headaches as a young child, but, of course they were dismissed because I was a child (under 12).
In the past year, I've been told I was "stressed," had a stroke, had complicated migraines, etc. Finally, I saw a neurologist who is a migraine specialist (Thank Heavens!). She diagnosed me with hemiplegic migraines.
My migraine specialist is kind and just plain wonderful. After a very long struggle, she is helping me get well. I actually went for 2 whole days last week with little to no headaches for the first time in 9 months. It was pure joy, and I could even walk better on those days and leave the house with some confidence.
I am so grateful for this space and for migraine specialists.
I had one episode of hemiplegic migraine. It was in February of 2007. I got the worst headache of my entire life. The whole right side of my body went numb. There were funky visual disturbances and I think there was some visual loss as well. I was puking my guts out
My speech was slurred and what you could understand was completely incoherrent. I was that way for about 12-14 hours. I really freaked everyone out! Thankfully the neurologist that was on call at our local hospital suffers from migraines so he knew exactly what was going on. Of course they did a CT to rule out a stroke. It was negative. They did one 10 days later because they said something about a stroke may not show up right away??? Well that was negative too. I was in the hospital for 10 days. The HA decreased in intensity but never fully went away. They pumped me full of steroids, dhe and God knows what else. Since that point I have been suffering from migraines 2-3X a week and chronic daily HA. The only realy period of relief was when I went on Namenda as a preventative in July 2008. I had a blessed 3 month period of absolutely no HA or neuro sx! But on Sunday, Sept. 29, it just came back. I only get relief for about 2-3 weeks at a time at the most. I am having increasing neuro sx. I have incredible numbness, tingling, and weakness in my hands, arms and face, muscle pain and weakness, fatigue, heat sensitivity, lightheadedness, ringing in the ears, visual disturbances, etc. They have always said that I "might have MS." But all of my neuros have always chalked all of my sx up to these blasted HAs. I went to the Cleveland Clinic on Monday to their MS Center. The guy blew me off. I tried to get an appt. in Pittsburgh, but can't get in until Jan. I am trying to get in to another center in Pittsburgh - hopefully will find out about that next week.
Hello, and welcome to MyMigraineConnection.com!
We are so happy you found us. You are in good company, there are a handful of other Hemiplegic Migraineurs here that will make you fill at home.
Our information on Hemiplegic Migraine is a good place to start. You can continue reading that article: Hemiplegic Migraine - The Basics.
Thank you for creating a SharePost. SharePosts are a form of blogging, and there are many things you can do with them. You can share an experience, suggest something that's helped you, use SharePosts as a Migraine and headache journal, and many other things.
We also have a discussion forum that you may want to check out. Especially if you have questions or are looking for information, you may find the interaction on the forum to be quite helpful. To get to the forum, just look for the orange box marked "Manage" and click on the Migraine Forums link. Because our forums are maintained by a third party, you'll need to register for the forum. You can use the same information you used to create your community log-in if you like. If you want to go directly to the forum, you can click HERE.
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If you have any questions, please feel free to post them to the forum or send me a message through my profile.
Welcome again,
Nancy BonkMyMigraineConnection.com Expert
Everytime I come to this site; I feel that my head is back on straight.
Not that I want people to have these horrible migraines, but there are answers and others have gone through this life long issue.
I will blue contacts and blue glasses to filter light waves.
Deb